Essay: Personal planning for families facing a diagnosis of dementia

Barbara Lindsay is the Senior Manager, Advocacy & Public Policy for the Alzheimer Society of B.C.Photo by
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Receiving a diagnosis of dementia is devastating — affecting the whole family and possibly changing lives forever.

The journey with dementia can last eight to 10 years and even longer for many people.

It is critical for caregivers to have information that enables them to support the person’s ability to make decisions for as long as possible and, when necessary, to make the right decisions on behalf of the person with dementia.

Sitting down with family to talk about legal arrangements becomes a necessary part of the journey.

Caregivers, whether family members or friends providing support, need to know as much as possible about the person’s values, beliefs and choices while the person is still able to participate in these discussions.

Families who use legal tools to accomplish their personal planning most often feel more secure and better prepared for the uncertain future of living with dementia.

Families who have not been able to plan ahead or where these plans have broken down, have to rely on other legal mechanisms which can be expensive and don’t guarantee that the decisions made on behalf of the person with dementia will reflect their own choices.

First and foremost, the person with dementia should carefully consider who they might choose for important decision-making appointments. The Alzheimer Society of B.C. has a Ready, Set, Plan! document that provides a checklist to help people think through the important planning issues families must consider.

The key legal tools for personal planning in B.C. are the enduring power of attorney and the representation agreement. Recent amendments effective as of Sept. 1, 2011, make these tools more accessible and strengthen safeguards, as well as introducing an advance directive.

An advance directive is a written instruction giving or refusing consent to health care and that informs the health-care team about a particular treatment decision when a person is no longer capable of giving or refusing consent to treatment.

An enduring power of attorney allows a person with dementia to appoint one or more people they trust as their attorney. The attorney is able to make financial and legal decisions when the person is no longer capable of doing so. An attorney is required to promote the person’s independence and involvement in decision-making to the extent reasonable, and to take into account the person’s wishes, beliefs and values. An attorney must act honestly and in good faith, and to exercise the care, diligence and skill of a reasonably prudent person.

A representation agreement allows a person with dementia to appoint a representative who is then able to make care decisions on their behalf when the person is no longer capable of doing so.

A representative can act as an advocate, working with health-care providers to ensure that the decisions made reflect the person’s wishes.

A Section 7 representation agreement is a valuable legal tool for adults who have diminished capacity to make decisions, because the designated representative is able to make personal and minor or major health-care decisions, certain legal decisions and the routine management of financial affairs.

If there is no enduring power of attorney or representation agreement, it may be necessary for the family to apply to court to be appointed as the committee of the person’s finances and/or committee of their person (for personal and health-care decisions).

This process requires the help of a lawyer, approval of the Public Trustee and Guardian, costs of approximately $3,000 or more, and the continued scrutiny of the Office of the Guardian and Trustee.

Having an enduring power of attorney and a representation agreement in place in most cases means it won’t be necessary for the family to rely on this process, which is time-consuming and can be very stressful.

Another option for health-care decision-making, for people without the benefit of a representation agreement, is the Health Care (Consent) and Care Facility (Admission) Act. This legislation sets out a process whereby a health-care provider who determines a person to be incapable of giving or refusing consent for health care can choose a temporary substitute decision-maker from a hierarchical list set out in the legislation. The list includes a person’s spouse, child, parents, siblings, grandparents, etc., who must make decisions according to the wishes of the person to the extent that these are known.

Finally, it is important to consider writing a will. A will is a legal document setting out a person’s instructions for managing their estate and takes effect after their death. It is important that the person with dementia prepare their will while they are still legally competent to do so.

This is a very brief description about personal planning in B.C.

At the Alzheimer Society of B.C. we encourage families to consult with their lawyer, notary and the Nidus Personal Planning Resource Centre. There are a number of excellent resources available:

Barbara Lindsay is the senior manager, advocacy and public policy, for the Alzheimer Society of B.C. and has been with the society since 1994. Her work with the society involves planning, implementing and evaluating public policy and advocacy, and liaising with government agencies and regional health authorities. A lawyer whose passion is for people rather than paperwork, Barbara also assists society staff in their work supporting people affected by dementia with their advocacy and legal planning, as well as providing advocacy skills training to staff and volunteers.

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